AUCD Network Members Participate in Spina Bifida Conferences

July 18, 2008

Three major conferences on spina bifida were held in June: the Spina Bifida Association of America (SBA), the International Federation on Spina Bifida and Hydrocephalus (IFSBH), and the Society for Research into Hydrocephalus and Spina Bifida (SRHSB). These conferences provided extensive opportunities for knowledge, resource and best-practice sharing, as well as networking between professionals, families, and adults and children living with spina bifida, and all three conferences were well attended by AUCD Network members as both presenters and participants.


Photo: at SBA
Dr. Thomas Webb accepts the Outstanding Service Provider Award for the Spina Bifida Clinic at Cincinnati Children's Hospital Center from Board chairwoman Joyce Jones at the National Spina Bifida Association Conference, June 25, 2008. (Photo: Steve Lambesis)

Held in Tucson, Arizona, the Spina Bifida Association of America national conference brought together clinical and policy professionals, adults with spina bifida, and parents of children with spina bifida. Children and youth with spina bifida have the special opportunity to attend the parallel Kids Camp, a hallmark of this national conference. This year was also the 35th Anniversary of the SBA's founding and a special celebration luncheon closed the conference, where the annual SBA awards were given. Cincinnati Children's Hospital Center, home of the University of Cincinnati UCEDD, was honored as Outstanding Service Provider for its Spina Bifida Clinic.

AUCD Network members making presentations at the SBA conference included: Thomas Webb (OH UCEDD), Bill Walker (WA UCEDD), Andrea Hart (AR UCEDD), and Sue Lin (AUCD central office). Tim Brei, who serves in a faculty role with the Indiana LEND, is also the SBA's Medical Director. The National Spina Bifida Program, where AUCD-NCBDDD Fellow Ann Alriksson-Schmidt is conducting longitudinal research on spina bifida, led and participated in a number of sessions and also convened a breakout working session of the ongoing National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Center for Disease Control and Prevention (CDC)-sponsored expert working group on Spina Bifida Transition that includes a number of the above network members and central office staff member David Morrissey. With a conference theme of "Building a Brighter Tomorrow," the SBA conference offered extensive programs this year on the topic of transition to adulthood and other quality of life themes.


At SBA Conference
David Morrissey (AUCD) with host-country Conference President Luis Quaresma at the International Federation for Spina Bifida and Hydrocephalus in Lisbon, Portugal, June 9, 2008

The IFSBH conference also brought together a broad array of stakeholders, such as families, adults with spina bifida, and medical professionals. Participants came to Lisbon, Portugal, for the three day conference from countries as diverse as Norway, Angola, Brazil, and the United States. Similar to the SBA conference this year, the IFSBH also had a focus on transition with the conference theme, "Drawing Smiles Toward Adulthood." AUCD staff member David Morrissey presented findings from the Arkansas UCEDD Research Topic Of Interest (RTOI) project on secondary conditions of youth in transition and also participated in the "Let them Grow, Let Them Go!" transition panel discussion. David also presented his graduate research publication "Voices of PWD in Vietnam" in the free communication session, which was honored as Best Free Communication.

The Society for Research into Hydrocephalus and Spina Bifida held its international conference on the campus of Brown University in Providence, Rhode Island and offered a scientific program predominantly attended by clinicians and research scientists. Eric Levey of the Kennedy Kreiger Institute (MD UCEDD) presented case analyses of Chiari II malformation and AUCD-NCBDDD Fellow Ann Alriksson-Schmidt joined with colleagues Judy Thibadeau and Mark Swanson in presentations on the National Spina Bifida Program at NCBDDD.

Upcoming Events
1. First World Congress on Spina Bifida Research and Care
Date: March 15-18, 2009
The SBA has announced the First World Congress on Spina Bifida Research and Care, which will be held at Walt Disney World Swan and Dolphin Resort, Orlando, Florida. This meeting promises to be a unique gathering of international Spina Bifida researchers and care specialists. For the first time, the international leaders in the medical and scientific community from the fields of neurosurgery, neurology, urology, developmental pediatrics, orthopedics, epidemiology, and other arenas will come together to discuss the future of care for this challenging and complex birth defect. Abstracts are now being accepted online and registration is open.

2. SBA Annual Conference
Date: June 30-July 3, 2009
The SBA and IFSBH will hold their two conferences jointly in 2009, also at Walt Disney World Swan and Dolphin Resort in Orlando, Florida. Workshops will include topics on education, vocational, transition, urology, orthopedics, neurology, neurosurgery treatment, and assistive technology. Adults with spina bifida, parents, kids, and health professionals will have the opportunity to attend special programming and events designed especially for them.